B12 217ng/L low folate/serum ferritin

[Sotired3]

Hello,I have been suffering with exhaustion, lighted head and occasionally hard to catch my breath. My doctor ran bloods, my folate is low at 3.4ug/L, serum ferritin 19.9ug/L and B12 is within range at 218ng/L(but low end). I'm wondering did anyone take B12 shots with these levels and did it help? Or did they find anything else they took was great for getting folate and ferritin levels back up? Thank you

[Oneash]

My Doctor told me to take folic acid, vitamin D and magnesium, along with my prescribed B12 injections. Floradix is a good way of getting Iron and B12 and B vitamins in.

If you are still absorbing B12, a supplement is much easier. Just be aware if you are heading for autoimmune Pernicious Anemia, folic acid supplements can mask things in blood tests.

You can get a shot at a beauticians for around £30 if you just want to see if it helps.

The natural way is to eat liver regularly. Prawns are pretty good too.

Big hugs and hope you feel more energetic soon.

[Sotired3 in reply to Oneash]

Thank you for the advice, it's very helpful 😊

[Sleepybunny]

Hi Sotired3,

I hope you have kind doctors who listen to you.

Many on here have met health professionals whose understanding of B12 deficiency is poor.

Do you mind me asking which country you are in?

The reason I'm asking is that patterns of treatment for B12 deficiency vary between countries.

In the UK people who are symptomatic for B12 deficiency are supposed to get treatment even if their serum (total) B12 is normal range.

Blog post about being symptomatic for B12 deficiency with an in range serum (total) B12.

b12deficiency.info/your-ser...

Some details in above post may be specific to UK.

Are your symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Do you have any of the following risk factors?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

I can see that your B12 level is lower than in your forum post 2 years ago.

Have you been tested for PA (Pernicious Anaemia)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society.org

There is a helpline number that PAS members can ring and an online contact form.

PAS support groups in UK

pernicious-anaemia-society....

There is a PAS support group in Chicago area, US.

Testing for PA

pernicious-anaemia-society....

Have you been tested for coeliac disease (spelt celiac in US)?

In UK, people with low B12, folate or iron are supposed to be tested for coeliac disease.

A few more B12 links that might be of interest...

B12 Info.com website (also known as B12 Info.com)

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Wrong ideas about B12 deficiency

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from other countries)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)

b12-institute.nl/en/diagnos...

One thing I would urge you to do is to track down any regional or national guidelines on treatment and diagnosis of B12 deficiency for your country.

If a person has both B12 and folate deficiencies, it's usual to start B12 treatment first.

Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

Here's one your doctors may be interested in.

Club B12 is a worldwide group of researchers, doctors and other interested people who are looking into B12. They have regular zoom meetings and a conference in UK later this year.

club-12.org/

There's a lot more information I can pass on especially if you're in UK so let me know if you want more information.

The pinned posts on this forum are worth looking at.

I'm not medically trained.

[Cornwaller]

You can check your symptoms online at B12d.org and see if it is likely you have b12 deficiency - if you have you could trial high doses of oral b12 to see if it helps or even consider shots. It is sensible to sort the b12 before the folate as folate supplementation can cause neurological damage when b12 deficiency is untreated!

A trial of b12 is as good a diagnostic method as any.

Your serum level is very low - google bmj b12 best practice - it is moderately probable you are deficient and certainly not optimal.

Finally when you've sorted your b12 / folate then check out your thyroid as thyroid issues are a common co morbidity and like with b12 don't necessarily accept what the GP says about your levels being "in range".

Best wishes

[topazrat]

I was diagnosed with P.A (positive Intrinsic factor and parietal antibodies) with a level of about 250 and started jabs. My folate was off the top of the scale at the time and came back down into range slowly over time. My ferritin at diagnosis was 5, which has slowly gone up over time, with the help of an initial course of iron tablets. I take a daily multivitamin tablet, plus extra Vit D, which seems to be doing the trick and keeps everything stable. The jabs certainly helped with symptoms, although I now self inject, as the NHS 3 monthly jab is nowhere near enough to keep my symptoms under control.

[KBird01 in reply to topazrat]

Interesting to hear about your folate levels topazrat . I was unable to obtain a diagnosis re B12, but now self-treat to good effect. My folate levels have always been off the top of the scale also, even when I didn't supplement with folate. It'll be interesting to see if mine come down now I'm on a regular regime. Could I ask how long before your folate came back into range?

[topazrat in reply to KBird01]

I'm not sure exactly how long it took. When I had a routine blood test a year later, it had come back down into normal range.

[KBird01 in reply to topazrat]

Ok, thank you. I'll watch mine with interest... 😊

[am111]

Your symptoms are starting symptoms of B12 deficiency. Monthly shots should sort it out, with perhaps weekly shots for a few weeks in the beginning. Also, take folate supplements.

[Sotired3]

Thank you all so much for sharing what has helped you/what you are taking. I think instead of buying over the counter Iron supplements and folate supplement as suggested by doctor, I will go back and will push to see can I get started on B12 injections.

[MindfulSquirrel in reply to Sotired3]

I’m surprised they didn’t prescribe you ferritin with that level! I got iron tablets on prescription with a level of 49ug and advice to get it to 100ug (it’s 70 something now).

Otherwise I was advised by the Wake Up Facebook group associated with the B12 Society to get folate up to and maintained within the top third of range, a B complex (but with B6 no more than 10mg and with 2 months off for every 4), iron and magnesium. Plus a potassium rich diet (but NOT supplements as apparently it’s really easy and dangerous to overshoot on them).

[Mixteca]

I'd request a full iron panel to have a clearer idea about deficiency as your ferritin is very low. You'll need good iron stores for B12 therapy to be effective. I found this out the hard way. Test before supplementing and starting injections as you've a better chance of getting a PA/B12D diagnosis.

[Sotired3 in reply to Mixteca]

I have a lot to learn, I must do more research. I didn't know I'd need good iron stores for B12 therapy to work, thank you for pointing that out.

[Mixteca in reply to Sotired3]

It's an ongoing and steep learning curve. My ferritin was trending downwards and dropped more quickly after I'd been injecting for quite a few months. I stopped seeing improvements and ended up very ill. I can't help feeling this deterioration might not have happened if my iron stores had been much higher. I initially had low folate too. I had the added complication of low sodium and ended up in hospital for 2 days. It was downhill from then on.

[Sotired3 in reply to Mixteca]

I'm sorry to hear that, thank you for sharing.

[Cherylclaire Forum Support]

I was lucky enough to have been tested for B12 deficiency when my test result was 196 ng/L with the range starting at 197 ng/L - so was started on B12 injections straight away !

By this time, I was having to hold onto the bus-stop sign in the mornings, just to get myself to work.

Since my hair was still falling out and my gums bleeding, my ferritin and folate were checked too: ferritin at 36 and folate at 5.5 - so given 3 months' supplement of both. These two remained erratic for two years and so required GP to carefully test, monitor and advise. With so much else going wrong, it would be impossible to know what needs addressing without this amount of help.

Vitamin D: a Dexascan found osteoporosis of the spine so I was given vitamin D and Raloxifene daily.

Thyroid: it might be worth also getting this checked. In the UK, a thyroid test is usually TSH and FT4, but a total thyroid check of these plus FT3 and especially including the autoimmune tests anti-TPO and anti-TG useful. Even if it proves okay, good to know that and have a baseline to refer to. This blood test can be done as a postal one with online results privately. I think I paid £60 for the 6 tests, which seemed reasonable.

I have been told by my Oral medicine consultant (treating angular cheilitis and burning tongue) to keep my ferritin above 80 - so that is what I try for. Not easy to get there and stay there at first, even with supplements.

Yes, a person can have B12 deficiency before being out of range. Mine was probably just within range just a few weeks prior to testing, but I have never felt worse.

When I continued to deteriorate, my MMA was tested - and was raised despite the B12 injections. My GP diagnosed functional B12 deficiency, confirmed by the testing laboratory and I was given more frequent B12 injections a s a result.

MMA testing can be a good secondary test if your B12 is low/borderline and you are displaying symptoms. Not easy for a GP to request as many local hospitals do not perform this test, but a persistent GP can find a way. I should imagine this is expensive as a private test.

So folate, ferritin, vitamin D and thyroid are the most likely to be also affected if you have B12 deficiency. A suspected B12 deficiency with a low b12 test result and deficiency symptoms can be confirmed if MMA is high. MMA should return to normal in-range levels soon after B12 loading dose is administered.

[I am not sure if you are UK- based: "B12 shots" and "doctor" rather than injections and GP makes me think you might be US- based. Hopefully some of this is still useful info. ]

[MindfulSquirrel in reply to Cherylclaire]

That’s useful to hear about the advice to maintain at 80. Mine is now in the low 70s but my GP has advised continuing on it until I reach 100. And whilst my angular cheilitis is much improved, it’s still not completely gone so I will keep my fingers crossed!

[Cherylclaire Forum Support in reply to MindfulSquirrel]

Use of nipple cream (if not allergic to lanolin) is really effective. Not as a cure, but for me, rid me of the symptom within a week. It will reappear within the same timeframe if stopped, though , or at least does for me. Important to not re-infect area, so advised to use once from a spoon each time, but actually the cream is so thick straight from the tube (as 100% pure lanolin) that I am quite happy to use this way without needing to double-dip.

Cultures never found any evidence for candida or staphylococcus - but these are the usual first tests. If you are seeing a consultant, worth asking for these tests if not already done. Mine were done a few times as consultant initially convinced that this was cause.

Fingers crossed for you.

[Sotired3]

Hi everybody, I just wanted to update you all. I was back to see the doctor, I am starting on iron and folic acid tablets and in two weeks I will be given a B12 injection. Thank you all for sharing your knowledge and experience, I really appreciate it.